Amyloid Diet

Any one following a specific diet for AL? I came across eHow website entitled How to Reduce Amyloid Protein in the Diet (I hope this link works) http://www.ehow.com/how_7898683_reduce-amyloid-protein-diet.html
Anyone familiar with any of these approaches?
Regardless of your diet /eating approach or habits during all of this - my questions are the same...
What about the U of Maryland Med. Center Diet also online? Any others that some of you like or don't & why? What to be cautious or not & why?
What does it/did it consist of - what are you avoiding or focusing on? What kind of responses are you having? What would you do different or the same & why? DId you include supplements - if so what ones & why? One site I read stay away from tomatoes but they are an anti-oxidant - can't remember why or where I read it. What about recipes, books, sites that promote cooking from scratch to avoid the items listed to keep from encouraging the buildup of Amyloid proteins in the tissues & organs & any health complications associated with it. Please feel free to expand your comments about diets but remember that the questions I have listed are at the forefront of my mind at the time I am writing this. Although with more exposure to learning more about intake I'm sure I'll have more questions. There's more questions but it's too late for any more tonight. Thanks.

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That article is pretty much a pile of nonsence. You DO NOT need to limit your intake of red meat. In fact, you need that protein to help retain muscle mass! When receiving any type of chemo you need to consult with your doctor BEFORE taking any type of supplement as many of them can interfer with the absorbtion of the drugs. If taking velcade you should NEVER ingest green tea! A balanced diet that is low in sodium is the best thing that you can do. Some patients also have problems with their albumin and potassium levels and the diet sometimes needs to be adjusted in that case. The Mayo Clinic has several different cookbooks http://store.mayoclinic.com/ that you can look at. I believe that they are also available on Amazon if you prefer to look there. The main thing for you is to not get sucked in by some random fad diet. The article that you posted lists the name of the Contributor but does not say anything about the qualifications of this person. That alone would make me extremely apprehensive! Any diet that is sponsored by a medical facility should be based in proper nutrition and ok. The University of Maryland has done liver transplants on several familial patients that I know and the head of their transplant department was a speaker at one of my meetings in DC a couple of years ago. Since early satiety can be a symptom of amyloidosis, many patients simply do not want to eat. It is essential to force food or liquids such as ensure or protein drinks down to help maintain strength. Come to the meeting on Saturday and ask the Mayo doctors your questions. They will be able to give you the best answers to your questions.

I hope to see you saturday!
Paula

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Thanks for your reply. I am actively pursuing the diet information you included, as well as, the eHow article I referenced. Will the cookbooks be available for purchase at Mayo on March 31st? Thanks.

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We will not have the cookbooks at the meeting since those are sold by Mayo. I believe they are sold in the store located in the hospital. I will however have copies of two different Amyloid books that you may like to look at. You really should consult with your doctor before taking any of the supplements that they talked about in that article. They could very well interfer with the chemo.

Paula

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Yes, I have read to consult with the MD on all supplements.

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DH & I went to the Mayo - Jax Gift shop after the support meeting. The woman there said they didn't carry them & I have not been able to find these elusive cookbooks online - I thought someone said they got them via Amazon but I didn't have any luck there. d

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Here you go....Amazon link:
http://www.amazon.com/s/ref=nb_sb_ss_c_1_5?url=search-alias%3Dstripbooks&fi eld-keywords=mayo+clinic+diet&sprefix=mayo+%2Caps%2C608

or the Mayo link:
http://store.mayoclinic.com/home.cfm?

Amazon is much cheaper!

They have some great smoothie recipies too!

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Paula, Excuse my lack of understanding. When I heard about these cookbooks I thought they were Amyloidosis specific. The link you provided were for Healthy Eating Cookbooks. Am I correct to assume there are no Amyloidosis specific cookbooks/recipes & that the focus is just on eating healthier? If that is the case.... I had already been doing & exercising through the Wellness Program offered through my employer beginning the end of 2010 & being diagnosed Feb. 3rd 2012. Doesn't appear that either one of those helped me - because now I have evil amy. What I find very interesting is that - except for 1 person - everyone I've met, emailed, read about or watched a video about was working, living a busy life & performing some kind of exercise on a regular basis. Diana

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Diana,
There are not any amyloid specific cookbooks. Simply eating a well balanced, low sodium diet is the best thing you can do. Since some patients have the early satiety, they simply don't want to eat and lose too much weight. In cases like that you must force yourself to eat or you will lose muscle mass and get progressively weaker. Many patients drink ensure...I know one in Tennessee that basically lived off of ensure and Wendys Strawberry swirl parfaits last year. If you become neutropenic due to chemo or if you were to have a SCT there are certain foods that you must stay away during that timeframe like fresh fruits, salads and veggies. Canned veggies must be eaten then. Strange that you can't eat things that are good for you but the risk from residual pesticides is too great. The doctors should explain all of that to you should your blood counts fall drastically. When my husband had chemo, he could eat apples, but only if I peeled them for him. Grapes were a no no because they are simply too hard to peel. Some have to be careful with bananas because of the potassium. But this all varies with each patient and their individual situation. If you decide to go to Mayo I am sure one of their nutritionists would be able to tell you what to eat and what to avoid.

While leading a healthy life is a great thing, it quite apparently does not prevent amyloidosis. But if you can continue to do some type of exercise that will benefit you, especially if you go on to SCT. Your body needs to be in as good of a physical shape as possible for that. The chemo will also change the taste of food for many patients. Foods they have loved all their lives will no longer appeal to them. Since your tastes may change, the doctors say it is a good time to try foods again that you have not liked in the past....you may actually like the flavor while on chemo!

This disease does not care if you have exercised all of your life or if you have been a couch potato. It will attack you either way. It does not discriminate, it attacks all ethnicities and genders....although it does seem to be more prevalent in men and it usually strikes folks after the age of 40...but I do know of some that were diagnosed in their 20's. It is an insidious disease, but the researchers are making advances in its treatments and patients are living much longer. We have really seen this improvement over the past 6 years. The bottom line is that you have to control your salt intake and eat as balanced of a diet as possible. Avoiding meat does not reduce the amount of amyloid in your bloodstream. The only thing that can effectively reduce that is to treat the disease. Once the production of amyloid has been turned off, only then can your body begin to heal itself and hopefully repair the damage done to the organs. That reversal of organ damage happens very slowly and can take years to accomplish, but it does happen in some cases. Lets hope and pray that you are one of those! Do yourself a favor and go to Mayo for an evaluation. Even if they completely agree with your other doctors, at least you have the peace of mind to know that your course of treatment is correct.

Paula

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